ANKYLOSING SPONDYLITIS

BLACK & WHITE ABSTRACT LIGHT STREAKS #7

Title: BLACK & WHITE ABSTRACT LIGHT STREAKS #7.

Creation Date: 23 August 2018.

⊙ Black & White Abstract Light Streaks Series.

Series: Black & White Abstract Light Streaks Photography Series.

Series Dates: Starting 28 July 2016 to Present.
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Copyright 2018 Nawfal Johnson.

All Rights Reserved.

Penang, Malaysia.

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Series Description:

The “Black & White Abstract Light Streaks” Series is an off-branch of my larger coloured light streaks collection, which is called, “Abstract Light Streaks”. I created this sub-series because I saw that by removing the colour from the photographs, the power of the line shapes and grey-tones took priority. The immediate visual power of the linear chaos-and-order is apparent when colours are removed. These Black & White light streaks drive home the power of curving and continuous energetic lines of varying thicknesses and grey tones.

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☆ Buy Fine Art Prints and Gallery Canvas from the following Sales Site Link @Imagekind¦

https://www.imagekind.com/BLACK–WHITE-ABSTRACT-LIGHT-STREAKS-7_art?imid=20016c3a-404c-4dee-af72-f7354d56116a
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Tags:
#1-percenters, #abstract-expressionism, #Ankylosing-Spondylitis, #battleship-galactic, #Bilderbergers, #Bohemian-Grove, #brain-waves, #bug, #butterfly, #centuries, #Centurion, #chaotic-otherworldly, #copper, #Cylon, #Depression, #digital, #electric-rectangular-mandala, #energized, #even, #fluid-light, #FLYING-ANT, #Free-Masons, #silver, #illuminati, #insect, #INSECTA, #I-Robot, #Johnson, #Knights-Templer, #light, #LOTUS, #lowlightphotography, #Malaysia, #masonic-art, #Morningstar, #moth, #mystical-art, #Nawfal, #New-World-Order, #nighttime, #nighttimephotography, #No-way-out, #Nur, #Penang, #photography, #psychedelic, #white, #electricity, #Secret-Societies, #silver, #streak, #symbiosis, #symmetrical, #symmetry, #urban-lights, #violent, #abstract, #light, #streaks, #order, #chaos, #twists, #turns, #swirling-around, #Johnson, #Black-and-white, #horizontal-light-mumbo, #streetlights, #orange, #red, #yellow, #white, #black, #Malaysia, #Penang, #conceptual, #theoretical, #abstruse, #hypothetical, #philosophical,, #unreal, #complex, #deep, #ideal, #intellectual, #indefinite, #nonconcrete, #recondite, #transcendent, #transcendental,

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“BLEED” DESCRIBES PERFECTLY WHAT MANY OF US SPONDIES GO THROUGH ON A NORMAL DAY – LIFE WITH ANKYLOSING SPONDYLITIS

I am speaking for, at least a few of us, my brothers and sisters, my fellow Spondies, who live with, and suffer from, some of the most agonizing types of pain one can endure, honestly, sometimes feeling like we are at death’s door, facing the reaper him or herself—torturing us without reason.



FOR THOSE OF YOU WHO DO NOT SPEAK EXTREME EXPERIMENTAL TECHNICAL DEATH METAL, HERE ARE THE BLEED LYRICS: BY MESHUGGAH

“Bleed”

Beams of fire sweep through my head
Thrusts of pain increasingly engaged
Sensory receptors succumb
I am no one now only agony

My crimson liquid so frantically spilled
the ruby fluid of life unleashed

Ripples ascend to the surface of my eyes
Their red pens drawing at random, at will
A myriad pains begotten in their wake
the bastard spawn of a mutinous self

The regurgitation of my micro nemesis
salivating red at the prospect of my ruin, my doom

Malfunction the means for its ascent
Bloodletting the stringent voice to beckon my soul
So futile any resisting tension
As death-induced mechanics propel its growth

The implement, the device of my extinction
the terminating clockwork of my gleeful bane
The definitive scourge of its mockery
the end-art instruments lethality attained

Heed – it commands, heed my will
Bleed – it says, bleed you will

Falling into the clarity of undoing
Scornful gods haggle for my soul
Minds eye flickers and vellicates as I let go
Taunting whispers accompany my deletion

A sneering grin, the voice of my reaper
chanting softly the song of depletion.

Beams of fire sweep through my head
Thrusts of pain increasingly engaged
Sensory receptors succumb
I am no one now only agony

My crimson liquid so frantically spilled
the ruby fluid of life unleashed

Ripples ascend to the surface of my eyes
Their red pens drawing at random, at will
A myriad pains begotten in their wake
the bastard spawn of a mutinous self

The regurgitation of my micro nemesis
salivating red at the prospect of my ruin, my doom

Malfunction the means for its ascent
Bloodletting the stringent voice to beckon my soul
So futile any resisting tension
As death-induced mechanics propel its growth

The implement, the device of my extinction
the terminating clockwork of my gleeful bane
The definitive scourge of its mockery
the end-art instruments lethality attained

Heed – it commands, heed my will
Bleed – it says, bleed you will

Falling into the clarity of undoing
Scornful gods haggle for my soul
Minds eye flickers and vellicates as I let go
Taunting whispers accompany my deletion

A sneering grin, the voice of my reaper
chanting softly the song of depletion.

Doctors and A.S.

Doctors, at least some of them, have no clue the levels of pain endurance us Spondies have to suffer thru: the insufferable waiting we have to do at hospitals, watching the patients’ numbers slowly, and more slowly, tick away, until it is our turn, to go in and see the doctor. We wait because hopefully, we want to grab onto some HOPE from the doctors we see, who are there to get us thru our pain, or, relieve our suffering, at least, a little bit.

THEY HAVE NO CLUE

What doctors and hospital staff do not realize is that us Spondies feel like our bones are being bent in all the wrong directions when we have to sit for hours in very uncomfortable chairs while simply waiting for our doctor’s visit!

ANKYLOSING SPONDYLITIS is a Horrible Arthritic Disease!

My fellow Spondies, if you are following this post, how do your feel during and after, your doctor’s office episodes?

☆ I’ll tell you how I feel, and yesterday’s HOSPITAL DOCTORS OFFICE APPOINTMENTS MARATHON was horrific, but it is a good example of my personal experience.

I don’t sleep well at night.

I get maybe 3 or 4 hours of decent sleep, at most, each night. And that being the case, I always wake up in pain: Usually, my knees have locked up during my sleep, so my knees are screaming in agony and they won’t move, and the same goes for my fingers—they are also locked and take time to get moving.

If I have morning doctor’s appointments, I have to get up by 5:30am or 6am, at the latest. Because of the huge lines of patients at the clinics, and because it is on a first come first serve basis, it is best to get to the hospital by 7:30am to put your appointment card into the box, even though most clinics don’t start seeing patients until 9am.

Unfortunately, it takes time for me to loosen up a little, enough to get ready and out the door.

And, unfortunately, ever since I was diagnosed with Ménière’s disease, which is an inner ear disease that causes dizziness, deafness, and vertigo, I stopped driving. I felt it would be very unsafe to drive while possibly feeling very dizzy. Therefore, I usually take the bus and I have to walk a lot to get to the hospital, and the walking really sucks because it causes me a lot of pain because of my A.S., and my Osteoporosis.

☆ Therefore, do you see! I am already in SERIOUS PAIN before I even arrive at the fracking hospital!

Yesterday, was no exception. After the 2 kilometer walk from the bus stop to the hospital, I was already cursing the Universe for inventing Ankylosing Spondylitis.

My heart sank when I finally was able to see the ENT Clinic door, and I noticed the throngs of eager patients scurrying and milling about and around the clinic entrance. I went in the clinic door and put my apppointment card into the little box, and noticed it was only 8am. I found one of the few seats available inside, and waited patiently for my name to be called to go in for my hearing test.

The plastic seats in the waiting area are what many Spondies would classify as TORTURE DEVICES. They are NOT ergonomically designed in any way, they are very hard, and the chair backs curve in all the worst angles for someone with lumbar spine disease, like us with A.S..

SITTING, STANDING, LYING DOWN, ARE ALL TORTURE FOR A.S. OWNERS!

Depending on how much time you are forced to be in any one position, sitting, standing, and lying down can all feel like torture to anyone with A.S..

I timed how long it was until my name was called to go in to the doctors’ area, to have my hearing test: It was 10:20am. I was sitting uncomfortably in that torture chair for over 2 hours! Sure, I could have stood instead of sittting–that was my choice. Certainly, I, with my dizziness and Osteoporosis, could have stood…standing for over 2 hours! Yeah, that would have been a GREAT FRACKING alternative option!

By the time my name was called, my knees had already locked up on me…have you ever had to move quickly only to painfully realize that your knees won’t move?!? It’s not fun, it is agonizing in fact.

“Yeah, I’ll be there with you in one FRACKING moment…don’t give my place to anyone else!”

I’ve already been waiting over 2 hours–AND, I’m ALREADY LATE for my NEXT doctor’s appointment, which was scheduled for 10am, at the Dermatology Clinic.

I go into the sound-proof booth and listen to the beeps through the headphones. Of course, I can’t hear any of the low frequency sounds, as I am already deaf in my left ear to all low and mid-low frequencies, but I also notice that I could not hear some of the high frequency beeps.

I wait some more, and finally see the doctor, who casually tells me that you know that you are already deaf in the lower range, but NOW, you are also a bit deaf in the high range too.

I think: “FRACKING GREAT! I’m going more deaf—JOY! Just what I wanted to hear—no pun intended. If I wasn’t already feeling down in the dirt, I was at that point.

SO…

THREE HOURS LATER! (As the SpongeBob Narrator would say)

I finally extricate myself from ENT at 11am, and I am now already 1 hour late for my Dermatology appointment. I won’t say what I go to the Dermatologist for, because I feel like Dermatology problems are very private types of medical issues.

Leave it to say, I had to sit one more hour in the torture chair before I saw the doctor.

I had one more doctor’s appointment.

Yes, 3 appointments on the same day. The third appointment was actually scheduled at the same time as my ENT appointment. I had no choice. We recently had 3 unexpected public holiday days where 2 of my appointments got moved to the 14th. So, that being the case, I had to choose which appointments got priority.

No need to mention what the thrid appointment was, but the main thing was that I was over 4 hours late, and the nurse wasn’t happy about it. But I did get to see the doctor.

CHAOS IN THE PHARMACY!

For some reason, the pharmacy at the hospital is FRACKED UP BEYOND ALL RECOGNITION (FUBAR)!

Their computerized numbering and computer voice systems are FUBAR. They were not working. Therefore, instead of waiting to see your number come up on the big computer monitors, and then going up to the counter to get your medication, the Pharmacists were yelling out names that corressponded to prescriptions.

☆ Can you imagine what it was like for me, someone with a hearing impairment, attempting to hear my name in a room of over 150 people, making noise, and pharmacists competing to yell loud enough over the crowd so names could be heard? It was horrendously difficult. I really had to focus my full attention on the pharmacist at counter 5, where my medication prescriptions were being processed.

Again, I had to sit in the torture chair. It was past 1pm already, my spine was SCREAMING in pain. My head was dizzy. The agony was so much, I thought I was going to be physically ill! I’m not sure how other Spondies get when they are in too much pain, but for me, I feel like I will be phycially ill, in other words, and I hate this word, “vomit“. But, truthfully, that is how I feel, and that is how I felt after my Hospital Marathon. Put yourself in my shoes and imagine what I was going thru.

BUT WAIT, THE FUN WASN’T OVER YET!

By 1:45pm, my name was finally called by the pharmacist, and I was lucky she could SCREAM!

I got my meds, and started my 1 kilometer walk in the tropical heat, to another bus stop. I got to the bus stop at a little after 2pm.

There are only two buses that go near my house—by near, I mean, half a kilometer.

My buses don’t come very often, so I wait, painfully some more, trading off between standing and sitting on even more uncomfortable torture-seating-devices at the bus stop.

So, I waited, and waited, the heat and humidity causing my A.S., to feel even worse.

By 2:30pm, a bus came, and I was finally on my way back home.

By 3:15 or thereabouts, I made it home, feeling like about 15 kilometers of really bad road (that is a saying we have in Nebraska, where I’m from, but the original is something like “Feeling like about 5 miles of really bad county road,” because county roads in Nebraska are prettty bumpy, not well taken care of, and in miserable condition for the most part — falling into ruin.)

EVER THINK THAT A DAY OF BEING AT THE HOSPITAL WOULD FEEL LIKE GOING 15 ROUNDS IN THE BOXING RING!

Yeah, honestly, that is how a day of activity, like I had, can feel excruciating painful, like being beaten to death in the boxing arena!

Do you realize, maybe most of you don’t, that a day of activity is not a glorious experience for many Spondies. It can be an adventure of agony. People of normal health may just feel annoyed being at the hospital all day. For a Spondy, being at the hospital all day, sitting in torture-furniture, or having to stand for long periods, it is what I classify as THIRD-DEGREE-MISERY!

MANY doctors don’t consider how the clinic environment affects different types of patients—decor is a one size fits all mentality. Nevertheless, people with spondyloarthrosis diseases, like A.S., can just suffer waiting like everyone else—is that the general idea? I guess so—seems fair.

The thing is, WE DO NOT SUFFER LIKE EVERYONE ELSE! WE SUFFER LIKE WE HAVE BEEN TO HELL AND HAVE VISITED WITH LUCIFER HIMSELF, IN HIS TORTURE CHAMBER!

AM I RIGHT, SPONDIES!?! Am I the only one who feels this way?

AND THE AFTER EFFECT—THE ONE OR TWO DAYS AFTER A HOSPITAL MARATHON, OR ANY MAJOR OUTING!

The after-effects of an exertion like the one I just experienced, will have shockwaves for 1 or 2 days afterwards. I, for one, feel an overpowering fatigue that will haunt me for a couple of days after some physical adventure. I will have extra pain, and extra fatigue—more than my usual fatigue.

You see, it is not all fun and games for a Spondy.

We experience life differently than people with normal health.

Yeah, I know, boo-hoo, this is the smallest violin playing the saddest song for you and all your A.S., and other health problems.

Yeah, I know life isn’t going to be easy for a Spondy, you are fracking right!

Yeah, I know, get the the FRACK OVER IT! LIFE CAN REALLY SUCK!

CONCLUSION AND FINAL THOUGHTS:

I should know very well that A.S., sucks BIG TIME!

I’ve owned this fracking disease for 38 years! It doesn’t seem to get any easier either. For those of you who are able to take the newer biological medications–that’s good–I hope it helps. For us “old-timer-A.S.’ers”, well, we have to deal with A.S., differently. We just have to find ways to manage the pain and fatigue, if possible. I’m not going to tell you how to do that, you have your own way already. I just hope it works for you.

Oh I Almost Forgot to Toot My Own Horn Again, But I Suppose it Would Be Good to do that 

I was featured in the December 2017 issue of URBAN HEALTH MAGAZINE.  December is almost over with, but not quite, so I will still mention it.

The article covers my life with my Art Photography, my life with Ankylosing Spondylitis (AS), a VERY long, lifetime degenerative joint, arthritic, autoimmune disease.  The article also touches on my life struggling with chronic depression and how I focus ALL (much of it) OF THIS PAIN into my Art Photography.  

You can get the magazine in Malaysia and probably Singapore.

Here is the cover and first page of the feature story.  The article may be of some comfort to anyone suffering with AS and Depression…perhaps.

Tropical fruits could drop on your head in Malaysia

Many tropical fruit trees grow randomly along the road here in Malaysia.  This, I think is either Soursop or something similar…not sure exactly.  Soursop is a great fruit for drinking as a juice and is probably loaded with vitamins.  But, I always thought how tropical fruits cost so much in many (most) non-tropical places (or the fruit is only found in a tin can…not fresh), but here, the fruit may just fall off a tree and smash you on the head!  Bad idea if it’s a coconut!  What’s criminal is that many grocery stores here will sell Malaysian tropical fruits at crazy high prices.  It’s insane because the same fruits can be found, often, on trees growing along the roadside, or, out in some abandoned land, etc.  Out-of-season fruits will be extra high-priced, for example, durian, dragon fruit, and any non-tropical imported fruits, or, “ORGANIC” fruits and vegetables.  I rarely photograph tropical fruits out in the wild, but saw this nice sample on my long walk back from the hospital, after my pain clinic appointment.  That’s an oxymoronic statement:  Pain Clinic appointment and then a 7 kilometres walk.  It’s exercise, painful, nonetheless.  The vibrant greens in the photo made the walk worth the pain.

ANKYLOSING SPONDYLITIS AWARENESS WALK (Unofficial and by myself) 7KMs Penang 21 August 2015

Yesterday, 21 August 2015, I decided it was time to attempt the 7 kilometer walk from my house to my late parent-in-laws house, here on Penang Island, Malaysia.  This was my ‘unofficial’ AS (Ankylosing Spondylitis) walk, which had two main purposes: 1) To raise awareness about AS; and 2) I would raise awareness of my work by creating photographs along the 7KM route. I would take that series of photographs and formulate a new blog entry about Ankylosing Spondylitis and show the images I designed on my walking trip.  It has been quite some time since I wrote a blog entry on AS, and I thought it was time to write a new blog entry to explain AS, the arthritic disease that I own—although…many days it owns me.

Ankylosing Spondylitis
There is no need for me to give a definition of AS of my own when the Mayo Clinic does a better job:

“The signs and symptoms of ankylosing spondylitis may include pain and stiffness in your lower back and hips, especially in the morning and after periods of inactivity. Over time, symptoms may worsen, improve or stop completely at irregular intervals.
The areas most commonly affected are:
The joint between the base of your spine and your pelvis.
The vertebrae in your lower back.
The places where your tendons and ligaments attach to bones, mainly in your spine, but sometimes along the back of your heel.
The cartilage between your breastbone and ribs.
Your hip and shoulder joints.”
(Source : http://www.mayoclinic.org/diseases-conditions/ankylosing-spondylitis/basics/symptoms/con-20019766 )

SPONDYLITIS.ORG

“Ankylosing spondylitis (pronounced ank-kih-low-sing spon-dill-eye-tiss), or AS, is a form of arthritis that primarily affects the spine, although other joints can become involved. It causes inflammation of the spinal joints (vertebrae) that can lead to severe, chronic pain and discomfort. In the most advanced cases (but not in all cases), this inflammation can lead to new bone formation on the spine, causing the spine to fuse in a fixed, immobile position, sometimes creating a forward-stooped posture. This forward curvature of the spine is called kyphosis. More information on kyphosis and fusion can be found in the complications section.

AS can also cause inflammation, pain and stiffness in other areas of the body such as the shoulders, hips, ribs, heels and small joints of the hands and feet. Sometimes the eyes can become involved (known as Iritis or Uveitis), and rarely, the lungs and heart can be affected.”  (Source : http://www.spondylitis.org/about/as.aspx )

My Personal Experiences With AS
I can tell you that it is a horrible and painful disease that I’ve had since I was 15 years old.  It is often referred to as an “Invisible (or “Unseen”) Disease” because people who suffer from AS can appear, on the surface, to be perfectly healthy.  What people can’t see is the tremendous pain that “Spondies” feel on an almost daily schedule.  People can’t see our suffering as we try to manage living life and praying that the pain, the stiffness, and the physical damage would just go away—but it doesn’t go away. 

I have been putting off the 7KM walk for AS AWARENESS, for weeks because I have felt so painful and depressed.  And yes, there is a strong correlation proven that AS patients have a high level of depression.  I have lived with AS for 13,009 days!  That is a lot of “PAIN DAYS!” 

I get Anterior Uveitis usually twice a year.  The last very serious case caused Pigment Dispersion (PD) on the inside of both of my eyes’ lenses; PD causing some  ‘vision blockage’ in my right eye.  This has been a difficult and depressing eye disease because I depend on my eyesight as a Photographer, and now my eyesight is noticeably damaged; nonetheless, I move forward with my photography.

Due to the stiffness in my lower lumbar spine, when I had a fall from an accident in mid-2004, some bones in my lumbar spine broke off, causing Spondylolisthesis (a slippage of the vertebrate bones from their proper positions), which caused nerve pinching, and then I couldn’t walk properly.  Thus, I had to have a Spinal Fusion of my lumbar spine: a 10-hour surgery, metal implants, loss of flexibility, learning to walk again, and a recovery period that lasted ALL of 2005.

I have no more joint material in my sacrum, this is called Sacroiliitis.

When I wake up in the morning, I cannot move my fingers due to the AS affecting my fingers. 

When I go see a movie, I’m one of the last to leave the theatre: after two hours of sitting and my knees lock up due to arthritic damage in my knees.

Some days I can’t move my head very much because I have compression of discs in my cervical spine.

Those are a few of the things I go through: many of these painful feelings and symptoms cannot be seen by others—the “Unseen Disease“.  Some Spondies suffer so much that it comes to a point where they are unable to work any more.  A lost livelihood can also be a Spondy’s ticket to becoming depressed.  Depression also leads to an exaggerated feeling of pain.  It is a very vicious cycle that feeds off of itself—a trap for which many Spondies have the potential of getting stuck.

So anyway…I have been putting off this walk because 7KM IS AN EXCRUCIATINGLY LONG WALK for someone with AS.  Nevertheless, and what the hell, I needed to do this thing! 

Here is a word of caution.  One reason I often hesitate to walk far from home base is because I always have to consider that if I walk somewhere, maybe just 1.5KM, to go to Gurney Plaza, for example, if my knee gives out on me while I’ve only gone halfway, it will be a vicious and slow walk back!  However this is not 1KM…it is 7KM!  That is crazy-far for a Spondy!  Don’t let AS stop you from moving about, but be aware of what your AS is telling you everyday: their are bad days, there are better than bad days, and surprisingly, there are some good days too!

THE AS WALK
I knew that the results of this AS Awareness Walk would give me a chance to produce a new series of abstract art photographs to accompany this discussion.  It is important for me to share what I know about my disease, and what I live with because of it.  I know that people who are newly diagnosed with AS can feel alone and depressed:  AS will change your life, and usually not in a good way.

I started out on my walk under partly sunny conditions; however, a thick dark wall of clouds were hovering over the hills…I should have known to take my umbrella.  However, I didn’t want to have more to carry and keep track of, so against my better judgement, I left my umbrella at home—BIG mistake!  The time was about 3:15PM.

Along my route, I found more than 20 interesting subjects to photograph. Each time I stopped to photograph was a blessed break from the walking.  I could take a photo, stretch a little, and then move forward on my way.  Nevertheless, I didn’t stay at any one spot for too long. 

Halfway along my route, after passing the Gurney Tower, the dark clouds were on the move and it started sprinkling. I knew I was in trouble at that point.  Within 5 minutes, it as raining.  Luckily, I had my trusty plastic courier bag with me for such occasions: I stored my camera in my camera bag, and then I put my bag inside the waterproof courier bag and tucked the bag under my arm. 

I stowed my camera away just in time because the rain began to pour down abruptly from that point onwards during my walk: my camera was safe but I quickly became a soaking mess with half of the journey to go…in the downpour.

I look back today, the day after the walk, and I’m glad I got enough photos to create a series, and that series of images are below.  I’m  also happy to share some words about AS with my blog readers: maybe it will be helpful for others struggling with this horrible form of arthritis. 

I’m not so thrilled about the extra pain I’m feeling today because of the walk, but I went into this adventure knowing from past experience that any exertion will cause suffering for one, two, or more days afterwards. 

By the way, my knee did give out about three blocks from the finish line: it was the most painful and wet three blocks of my life as I tried to take one good step with my left leg, and then having to pull my gimpy right leg forward.  That part of the walk was madness-in-pain!

It took me approximately two hours to walk the 7KM.  I guess being in pain makes me know that I’m still alive:  I’ve got to look at the bright side of this disease the I own.  Another ray of hope during the drippy day was toward the end of the walk, one lady seeing me drenched offered her umbrella to me. I thanked her—I was indeed touched by her kindness. However, I told her that I was OK and that she should keep her umbrella or we would both be sopping wet.

This is the AS AWARENESS WALK PHOTO SERIES.  All images are the copyright of me, Nawfal Johnson, and they were created on 21 August 2015.  All Rights Reserved.  These images will eventually be available as photographic prints at my Imagekind sales gallery.  My link is: http://nawfalnur.imagekind.com

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Nawfal Johnson Nur ~ http://nawfalnur.imagekind.com/

The death of a beloved cat, Ramadhan, and Ankylosing Spondylitis

The death of a beloved cat, Ramadhan, and Ankylosing Spondylitis.

 

Let me start by asking this question: What do all three of those seemingly unrelated subjects have in common (the three things listed in the title above)? It’s rhetorical, so don’t feel badly if you did not guess correctly.

Yesterday, our family lost the matriarch of our cat colony – Salimah Bee Bee: She was 13 and half years old. In most regards, she was, and always had been “THE BEST CAT”: Well-behaved, always used the cat box, was patient with her clan members, loving toward us, mothered the small ones, and was just the sweetest and best Tortie-White EVER!

SALIMAH BEE, No1, Edit C, 16Dec09

SALIMAH BEE BEE, No1, Edit C, 16Dec09. Copyright 2009 Nawfal Johnson ~ All Rights Reserved.

This is a photo of Salimah Bee Bee from 2009.

She had suffered from breast cancer for several months. Yes, now you know; if you did not know before, animals can get breast cancer. By the time Salimah died, the tumors had ravaged a lot of her.

We wanted to give her the best life possible: she loved life. She loved food. Even with cancer, when it came to mealtime, you would think there was nothing at all wrong with her. If you would put her cancerous condition compared to a human with the same amount of cancer, I’m sure the human would not have even been able to sit upright. Nevertheless, Salimah was still running, jumping, eating, looking outside, rolling around on the hot cement (something she loved to do) and dreaming of catching birds.

It is the month of Ramadhan – Fasting Month:

About 24 hours before yesterday when she died, her health had begun to deteriorate drastically. Thus, it was yesterday that we had decided that it would probably be best to have her be put to sleep. Salimah made it to the veterinary’s office, but before the Vet could even begin the procedure, she had already died.

Being that it is ‘Fasting Month’ – we (the family) were all physically stressed from lack of water, tired, emotionally stressed, and after her death, extremely sad.

I have dug a lot of burial plots for our dearly departed furry family members, but I can’t remember digging one during Ramadhan. Yesterday it was extremely hot: I don’t know the exact degrees, but it was probably in the 90’s (F), and it was very humid.

For my cats, I must always prepare the burial spot just as a cemetery worker does for any dearly departed Muslim family member. I do not make distinctions between the importance of non-furry and furry family members. Not everyone feels the same way about ‘pets’.

I do not like the word, ‘pet’ – it sounds very servile or second-class. I prefer the term ‘furry family member’. Of course, that could refer to your old, Uncle George who has an extraordinary amount of back hair, but in this case, I’m talking about the four-legged family members.

STRESS, BODILY EXERTION, and ANKYLOSING SPONDYLITIS:

Being dehydrated and having a Rheumatoid arthritis disease, like the one I own, ankylosing spondylitis, creates havoc and extra pain throughout the ‘joints system’ of the body. Leave it to be, I wasn’t going to let my bodily pain shortcut the efforts to provide Salimah Bee Bee with a good and proper burial. Thus, I proceeded with as much gusto as I could muster, to make things just right.

Her body was placed into the cube that I dug out of the somewhat dark, clayey-hard soil. I recited Al-Fatihah for her, and recited several other prayers asking God, wishing, and hoping that her soul was peaceful and at rest.

At about 7:30pm (approximately), with the words of the Ahdzan filling the airwaves, coming from the local mosques, we broke our fast. The day was coming to an end, a sad end. For me, it was a sad and painful end.

ANKYLOSING SPONDYLITIS and BURIALS

This morning, I woke up at the sound of my alarm at 4:30am, to have my suhoor, which is the breakfast meal before beginning fasting. It felt like every joint in my spine, my knees, my shoulders, and my legs were super-glued – just pushing myself to move was causing a solid “8.5” on the Pain Scale! This is what a ‘morning-after’ is like for an ankylosing spondylitis sufferer when a burial is performed the day before.

I really tried to stay up-and-awake to get to my day of work. I just couldn’t take the pain. I couldn’t even sit in my work chair – it was so uncomfortable and excruciating!

During fasting, no medications are allowed to be taken during your fast.  Thus, I usually schedule taking my pain medications for right before beginning my fast, and shortly after ending my fast. This morning I made sure to take my meds., but there was no relief.

This entire day, I felt so horribly and physically achy, that I could hardly get out of bed. I went back to sleep at around 9:00am, and only got up a couple of times between that time and the time when we break fast in the evening.

Of course, I would not have changed a thing about the ways and efforts I did for Salimah Bee Bee. The shocker for me, however, was how horribly affected I would be today. It was like the day didn’t happen – where did the day go?

So now you know the connections among the Death of a Loved Furry Family Member; the Struggles Faced during Fasting Month; and that of Suffering from Ankylosing Spondylitis.


 

On a side-note:

I am so backlogged with work that I have not published to my photo-blog! It is crazy! I have paintings and photographs from April that have not been shown yet. I want to get it all uploaded to my Sales Gallery at http://nawfalnur.imagekind.com/ and at the same time, to show the images here at my https://smokephotographist.wordpress.com/ photo-blog.

I think that the time it takes me to do tasks is the main culprit that causes my delays: Time and the Speed of my Internet connection are the main issues! LOLOL!

Well, I’ll do my best because I just need to get these things accomplished. With the death of my Salimah, it is a reminder that our time on this earth is very limited and we need to get as much accomplished and enjoy our time to the best of our abilities and efforts.

WHAT AN ANKYLOSING SPONDYLITIS (A.S.) ATTACK FEELS LIKE

The only way I can show you what an Ankylosing Spondylitis (A.S.) Flare-up (Attack) feels like is if you imagine your chest being stepped on by an elephant, and also at the same time, someone is sticking a screwdriver into your spine.  That is as close to what an A.S. Flare-up feels like:  I should know – I’ve been going through one for the last 6 or 7 hours.  Arthritis does really suck!

Image

The greater the…

The greater the difficulty, the more the glory in surmounting it.
– Epicurus

At least that is what I have to constantly tell myself as I am still struggling with this Iritis.  I have not been on the computer in days, however it is necessary from time-to-time to see if there are important emails to respond to, or…whatever.

I made mention to a friend, recently, that Beethoven MUST have been the MOST GENIUS dude ever!  While being almost totally deaf, he composed music.

I sit here, and if I close my left eye, and with my reading glasses on, my right eye sees the computer screen in a heavy fog, not able to read text.  I wonder in blurry melancholy, will my right eye return to health?  I wonder…is this the medications causing the smear of color across the computer screen?

I wonder, what good is a photographer who cannot see clearly, or who cannot tell if an image is in good focus?

Yeah…I guess I am a bit down in the dumps for now.

Worse yet is that I feel tinges of pain in the left eye, a little at least.  Having iritis in two eyes at the same time is like bloody-intolerable.

Pity-Party…perhaps.

I just have to remember Epicurus’s words, especially when things seem at their worst.

Believe it or not, I have, during this storm-of-fog, composed some photographs, and have finished one abstract expressionism painting.  I am not totally sure what the finer details look like in either art-form, because I cannot see the finer details at the moment…that will have to wait.

I am hoping for a full recovery, and that my eyesight is returned to what it was (at least) prior to this hell-storm-case of iritis.

I wish I could spend more time on the computer so I can catch up with my friends’ blogs here at WP:  That will have to wait too.

A Bit about My Life with Ankylosing Spondylitis

Photograph 1 : PRANGIN MALL INTERIOR, Photographed with my trusty Panasonic DMC-LZ8: Shutter Speed 1/5 Sec; Aperture @ f/4.5; ISO = 100. This image has NOTHING to do with this article, but I took this photograph yesterday while at the mall, and I like the results…so, here it is!  My Panasonic camera is also very Ankylosing Spondylitis friendly because it is a Point-And-Shoot Camera, and I can wear it in its case, on my pants belt.  Keep that in mind if you have AS:  The weight of camera gear will affect your back health – believe me – I know.

My Life with Ankylosing Spondylitis

It is 5:40am: I am awake. I am in pain.

I only fell asleep at about 2:00am. At least I got that little bit of sleep with the help of my pain meds, which finally kicked in around that time.

I got approximately 3 hours of sleep. However, “The numbers don’t add up you say”: Correct, the other 40 minutes were used up being awake each time a stabbing pain shot through my neck, my ribcage, my spine, or my hip joints. During those brief times, about 20, or 30, or more, when I’m tossing and turning to get a better position to sleep, yes, that is where those 40 minutes go to during the three hours I do get to sleep at night. This trend is not happening to me every night, but it does most nights: And, when you add up all the missed sleep over 33 years of living with AS, that is a hell of a lot of days, or weeks of sleep missed.

Moreover, you may be saying: “But Nawfal, 3 hours sleep a night isn’t so bad,” right.  I will probably respond with,

“What planet do you live on?”

I need at least 9 hours sleep, full-hours of sleep, to recover from the suffering I go through the day before, but I rarely come close to 6 or 7 hours of sleep a day.  That is NOT enough sleep for someone suffering from chronic pain.

I’ll also tell you that to get those 3 hours of sleep I take enough pain killers that would probably knock-the-crud out of a Hippopotamus!

I have to take 600 to 900mg of Gabapentin and 100mg of Tramadol at night to deal with the pain, and then, it still isn’t totally effective! These are HEAVY-DUTY pain and nerve painkillers. Those are the amounts I take ONLY at night: I have to take more than that during the daylight hours to get through the day with half the amount of pain. Therefore, don’t be telling an AS’er that, “Oh, it’s not that bad,” or, “Oh, meditation will cure you,” or whatever else witch-doctor medicine you may prescribe to—don’t be telling an AS sufferer what they should feel like because if you don’t have AS, then you don’t have a clue what you are talking about. You have no understanding what we go through. Even the smarty doctors don’t grasp what we deal with; all that the doctors know are book-smarts of AS; however, they don’t understand the real toll it takes on a Spondy.

(Updated 13 January 2017)  I am currently under a new pain meds regime, which is pretty good.  I go to the Pain Clinic, and the doctors do care about my pain-control regime.

THIS ESSAY IS MEANT FOR INFORMATIONAL PURPOSES!

I’m writing this because I think people don’t have a clue what AS’ers, or Spondies go through.  I’m writing this to educate people a bit about what Ankylosing Spondylitis is, and how it affects people with this disease.  

I’m not qualified to tell you what other AS sufferers go through because we are all suffering differently with diverse pain in different parts of our body, and to unusual degrees of pain.

In this essay, I will tell you a little about the pain I deal with daily, and that will give you an ideal of what we, most AS’ers, go through daily. I will use AS’ers and Spondy (Spondies) interchangeably, just to let you know.

Some Spondies are much worse off than I am; and others, they are better off than I am. The AS condition that any one person deals with, can change over time. It is unpredictable, and that is what makes it so maddening and frustrating for the AS patient. There are huge flare-up times when pain is excruciating; and then, there are times when the pain lulls and is just there at the surface, and very manageable. Spondies and their circumstances are all different.

Ankylosing Spondylitis (AS)—What is it?

Let me offer you some information about AS, from medical sources.

The first description of AS, below, is from the Mayo Clinic website, and it is a very good source of information on the topic of Ankylosing Spondylitis. Please excuse my cutting and pasting of definitions; however, I cannot explain it medically like the sources can, and I want to give you the best explanations possible from the medical sources, giving credit to the sources below each quotation:

“Ankylosing spondylitis is an inflammatory disease that can cause some of the vertebrae in your spine to fuse together. This fusing makes the spine less flexible and can result in a hunched-forward posture. A severe case of ankylosing spondylitis can make it impossible for you to lift your head high enough to see forward. Ankylosing spondylitis affects men more often than women. Signs and symptoms of ankylosing spondylitis typically begin in early adulthood. Inflammation also can occur in other parts of your body — such as your eyes and bowels. There is no cure for ankylosing spondylitis, but treatments can decrease your pain and lessen your symptoms.”

[ http://www.mayoclinic.com/health/ankylosing-spondylitis/DS00483 ]

  • It is interesting to know that AS is also known as Marie-Strumpell Disease.

The following is the description of AS by Cedars-Sinai Hospital:

“Ankylosing Spondylitis (Marie-Strumpell Disease)

Ankylosing spondylitis (AS) is a systemic condition in which the joints and ligaments of the back become inflamed and eventually fuse.

Symptoms

AS causes stiffness, usually starting in the lower back. Over time it may spread into the upper spine, causing joints and bones to become fused. This makes the spine rigid.
About a third of all persons with AS may have symptoms that affect other parts of the body besides the joints and ligaments, including ones affecting the heart and blood vessels.

Causes and Risk Factors

This condition tends to be inherited. It most commonly occurs in men between the ages of 16 and 30, but can also occur in women.

Diagnosis

Some blood tests can help identify that the symptoms are those of AS. MRI is used to diagnose the condition.  Some changes caused by AS only begin appearing over a period of 10 years or so.

Treatment

The earlier AS is treated, the better. Once joints fuse (become joined together and rigid), mobility won’t completely return even with treatment. Drugs may relieve the pain it causes.

Usually, AS is treated with:

  • Physical therapy to help reduce pain and stiffness and help preserve back mobility
  • Drug therapy. This includes over-the-counter drugs that relieve pain (such as aspirin, ibuprofen, naproxen and piroxicam). It can also include drugs that modify rheumatic diseases (such as sulfasalazine and methotrexate and corticosteroids like prednisone. Researchers are also looking at promising, new drugs, such as tumor necrosis factor (TNF) blockers etanercept and infliximab.”

[ Source: http://cedars-sinai.edu/Patients/Health-Conditions/Ankylosing-Spondylitis-Marie-Strumpell-Disease.aspx ]

I read that Johns Hopkins Medical Hospital is ranked #1 by US News for Rheumatology Medicine, and here is how they describe Ankylosing Spondylitis. I like the description by Johns Hopkins the best; they really get to the meat of the issue and describes not only what AS is, but how we AS’ers experience various symptoms. I have put a big “YES”, OR, I describe my personal symptoms next to their symptoms below.

Ankylosing Spondylitis

What is ankylosing spondylitis?

Ankylosing spondylitis (AS) is a type of arthritis that affects the spine. Ankylosing means stiff or rigid, spondyl means spine, and itis refers to inflammation. The disease causes inflammation of the spine and large joints, resulting in stiffness and pain. The disease may result in erosion at the joint between the spine and the hip bone (the sacroiliac joint), and the formation of bony bridges between vertebrae in the spine, fusing those bones. In addition, bones in the chest may fuse. The cause of AS is unknown, although researchers suspect genetics play a role. A gene called HLA-B27 occurs in over 95 percent of those with AS. However, some people with the HLA-B27 gene do not have AS.

Who is affected by ankylosing spondylitis?

AS is more common among young people, between ages 17 and 35, but it can occur in children and older adults as well. The disease affects two to three times more young men than women and it tends to run in families.

What are the symptoms of ankylosing spondylitis?

Symptoms of AS tend to occur and disappear over periods of time. The following are the most common symptoms of AS. However, each individual may experience symptoms differently. Symptoms may include:

  • Back pain, usually most severe at night during rest: YES!
  • Early morning stiffness: YES!
  • Stooped posture in response to back pain (bending forward tends to relieve the pain): A LITTLE BIT.
  • Straight and stiff spine: YES! (Updated 13 January 2017):  More flexible the more I move and stretch.  
  • Inability to take a deep breath, if the joints between the ribs and spine are affected: YES – ALL NIGHT LONG MOST OF THE TIME, WHEN THE PAIN MEDS ARE NOT EFFECTIVE!
  • Appetite loss: SOMETIMES.
  • Weight loss: I DON’T GAIN WEIGHT!
  • Fatigue: ALMOST ALL THE TIME!
  • Fever: NO, MY BODY TEMP IS NORMALLY BELOW NORMAL.
  • Anemia: NOT THAT I KNOW OF.
  • Joint pain: ALL THE TIME!
  • Mild eye inflammation: ABOUT ONCE OR TWICE A YEAR SOMETIMES, NOT MILD, BUT MAJOR DAMNED PAIN OF THE EYEBALL – THIS EYE DISEASE IS CALLED IRITIS!
  • Organ damage, such as the heart, lungs, and eyes: PROBABLY SOME EYE DAMAGE OVER THE YEARS DUE TO RECURRING IRITIS. NOT SURE ABOUT DAMAGE TO OTHER MAJOR ORGANS.
  • Skin rashes: I ALSO SUFFER FROM ECZEMA ON MY HANDS AND FEET, WHICH IS HORRIBLE—SOMETIMES WHEN I WAKE UP IN THE MORNING, or the MIDDLE OF THE NIGHT, I WILL DISCOVER THAT I HAVE SCRATCHED MY SKIN SO FEROCIOUSLY DURING THE NIGHT THAT I HAVE RIPPED MY SKIN OFF AND IT IS A BLOODY MESS: ECZEMA is NO fun.
  • Gastrointestinal illness (such as Crohn’s or ulcerative colitis): NO CROHN’S DISEASE – THANK GOD!
  • (Updated and Added, 13 January 2017):  PERIODONTITIS!  YES!  Studies show a connection between Ankylosing Spondylitis and Periodontitis.  I have lost significant jaw bone to this disease—it’s just not there anymore!  Here is the conclusion to one recent study:

“This study succeeded in revealing an association between AS and chronic periodontitis, thus adding large-scale population-based epidemiologic evidence to the body of knowledge surrounding this association. After adjusting for socioeconomic factors, we found AS patients to be 1.84 times more likely than controls to have had a previous diagnosis of chronic periodontitis,
with no significant difference being detected after stratifying by sex. We also found the association between chronic periodontitis and AS to be attenuated among chronic periodontitis patients who underwent either a gingivectomy or periodontal flap surgery (OR 1.70).”

(Source: Association Between Ankylosing Spondylitis and
Chronic Periodontitis A Population-Based Study
Joseph J. Keller, Jiunn-Horng Kang, and Herng-Ching Lin).

The symptoms of ankylosing spondylitis may resemble other medical conditions or problems. Always consult your doctor for a diagnosis.”

[ Source: http://www.hopkinsmedicine.org/healthlibrary/conditions/adult/arthritis_and_other_rheumatic_diseases/ankylosing_spondylitis_85,P00045/ ]

Those are some of the BEST descriptions from medical websites that I have discovered thus far.

MY CURRENT LIST OF INJURIES OR MEDICAL CONDITIONS CAUSED (MOST ASSUREDLY) BY ANKYLOSING SPONDYLITIS :

1: Fractured Lumbar Spine (2 places), leading to Spondylolisthesis, leading to 10-hour Spinal Fussion surgery, leading to nearly one year recovery.

2:  Sacroiliitis.

3: Compressed Cervical Disks.

4: Alveoloplasty due to Periodontitis, due to AS.  Would need some serious bone grafting to fix my jaw bone.

5:  Osteoporosis.  (Study of Bone Mineral Density in Patients with Ankylosing Spondylitis, by Hatinder Jeet Singh, Kaur Nimarpreet, […], and Shesh Prakash).

6: A kind of Pigment Dispersion on my eye’s lens, causing some eye damage (visual impairment of sorts), caused by Chronic Iritis.

7:  RA in other joints.

8: Depression  (contributed to by Ankylosing Spondylitis).

___

How is it for Spondy’s in Real Life:

Medical descriptions are fine, but how does AS affect a Spondy’s life, that is the real important question that most people do not, or cannot even comprehend unless if they endure the pain of AS.  My “real-life” list of ‘How AS affects a Spondy’s Life?’, you would have just read in the above section.

AS is known as the ‘Unseen Arthritis Disease’:

You may be asking, “What is an unseen disease?”

Let me tell you, if you look at the majority of AS patients, they probably seem reasonably normal on the outside, just like other people on the street with good health.  This being true for so many AS’ers, it is even more difficult for people to understand the trials and tribulations that AS patients go though.

If you will allow me to make a fruit analogy, this is what I would say: The outside appearance of many Spondies is similar to the outside skin of a diseased mango:  the skin usually looks great!  “OK, Nawfal, where are you going with this – You say Spondies look like diseased mangoes!”  You exclaim with obvious frowns, outrage, and skepticism.

Let me continue, all right, geezzzzzz!  Give me a chance to explain.

Most mangoes look great from the outside, it is only when you inspect the inside, cut it open, that you discover if it is good or not. I believe that parasites, fruit fly eggs, etc. infect/infest mangoes, during the flowering stage of growth, thus, the wormy thing is inside the mango as the fruit grows. Thus, the skin of the mango may look quite appetizing; however, when you cut it open, you may discover that things are very wrong with the mango. Do you see the connection? Diseased Mango…Ankylosing Spondylitis! 

We may look GREAT, or OK, on the outside, but inside we may have many medical problems to deal with caused by AS. 

Well, I did my best to make the analogy…maybe some will understand what I’m attempting to get across here.

Some AS patients have very obvious deformations in their joint-bone connections – they fall into the obvious / seen-arthritis category.

There are some very serious consequences left out by the hospital websites that the average Joe (or Jane) would not realize about AS and its effects on a patient.  These issues are often overlooked when discussions come up about Ankylosing Spondylitis:

  • Extreme and Chronic Depression! No amounts of fairy-dust or positive affirmations are going to make Ankylosing Spondylitis go away: As the Mayo Clinic’s definition clearly stated, there is no cure for AS.  AS can make a person feel extreme pain and a sense of hopelessness, which tends to lead to depression.  There are only methods, exercises, medications, and home remedies that may, or may not help relieve the symptoms of AS.  However, if depression affects an AS patient, things for that patient can become very bad, especially if left untreated.
  • Does having a positive attitude help with AS? Yeah, it can—Why? Because AS symptoms gets worse with stress. If you are the “worrying” type of person, as I am, the stress of even basic things can overload the autoimmune system and that causes extra inflammation in the body, or at least, it seems to cause more inflammation and pain.
  • Symptoms also get worse when I eat certain foods that cause more inflammation in the body and I will list the foods that affect me the worst.
    • Potatoes: This includes French fries, baked potatoes, scalloped potatoes, any potatoes. I love potatoes but they do NOT love me!
    • Tomatoes: Especially raw from the garden tomatoes, V8 Juice, any tomato juice, tomato paste (this is really bad for my AS), and that is the reason I suffer more after eating pizza. Ketchup seems OK with me, and I’m not sure why, but it does not really affect me very much.
    • Yellow Dal: I love South Indian Dal with chapati, but I suffer major time after eating it. Red Dal is better for me.
    • Eggplant (Terung – in Malay language): I enjoy eating eggplant, especially in curries, but it does not like me.
    • CAULIFLOWER: I really like cauliflower, but it is one of the worst inflammation causing vegetables for me. CABBAGE is of the same degree of BAD for my AS.
    • Milk. Milk is not so good for my AS.
    • Shellfish also affects and causes inflammation in the body, but I can’t eat it anyway because I’m allergic to most shellfish, and those sauces derived from shellfish (e.g., clam sauce, etc.)

Having AS is not Cheap – this is another Major Issue NOT Often Tackled or Discussed!  The cost of having AS is not a symptom, but the high-cost of treating a life-long disease is a burden, and it is a consequence of having AS!

If you calculate the following formula, you will quickly discover that having AS is NOT a cheap disease to have:

  • AS is a life-long disease meaning that a Spondy needs treatment and medication for life, +
  • Spondies may have difficulty working like a healthier person does, so perhaps they have less income coming in, +
  • There are more costs and financial burdens of seeing specialist Orthopedic and Rheumatology doctors, often, +
  • Spondies need to have special MRI scans and X-Rays, +
  • Spondies need to have special and expensive blood tests done, +
  • Spondies need to see other specialists when associated diseases occur (i.e., When I have Iritis, I need to visit my Ophthalmologist.)

What is the sum of all that? It adds up to a WHOOP’ASS of financial burden!

So tell me, if a Spondy has difficulty during the normal working day, can not function in the ‘normal’ 9 to 5 work place, must depend on other creative means and talents for their financial resources, plus, they have to deal with so many medical expenses and problems, then doesn’t it add up to a lot of financial stress?  Yes, I’ll answer that one for you.

What did I mention earlier in this long note? Stress causes extra problems for a Spondy—MORE Pain!

Ankylosing Spondylitis is a very complex and unpredictable arthritic, autoimmune, seronegative spondyloarthropathy, degenerative joint disease.

AS not only affects many of the joints of the body, but it also can cause health problems with the eyes, heart, skin, bowels, and other vital organs.

It is a disease that affects not only the person physically, but it also takes a toll on the mental health of a Spondy. Some people are stronger than others are and can cope well, or at least, at a level where they can control the hopeless feelings that many people feel who suffer from chronic pain.

I have taken so many medications over these 33 years that it could cause other problems as medications are filtered through other vital organs, other AS’ers may also have this situation.

Also, some, if not many, Spondies must deal with the stress of financial-pain, and this is a reality for many with AS.

Having fun and being social is even difficult much of the time, for example, going to the movies and sitting for a simple one and a half hours, can have such a painful after effect, that I do not often want to go to the movies. ONLY if it is a great movie like LOTR (Lord of the Rings), then I will go and sit through that, and then the pain of sitting there for so long, is somewhat worth it.

I didn’t even touch on sports and exercise yet!

If a Spondy has access to a swimming pool, then swimming is good exercise, that is, if they want to risk getting infected by the masses of bacteria that most public swimming pools are infected with.

Yes, this will shock you and you may not realize this, but there was a recent study done, asking adults, “Have you peed in the public swimming pool?” One in Five adults ADMITTED to peeing in the public swimming pool occasionally! 70% of adults do not shower before entering the public pool. That’s only the ones that admitted to it – the percentage is probably much higher for both issues (peeing and not showering)!

Moreover, you know kids…I won’t even go into that category and their behavior at public swimming pools…I don’t even want to think about it!

Most people probably have the idea that the chlorine will kill the germs and bacteria in the swimming pool: chlorine will kill the first few batches of bacteria, but as more and more bacteria is added to the pool, the chlorine is overwhelmed and becomes very much less effective. So, don’t believe you are safe in public pools. [ Source: http://www.dailymail.co.uk/news/article-2152700/One-FIVE-adults-urinate-swimming-pools-70-dont-shower-diving-in.html ]

Any sport that is too strenuous or contact-driven, is probably not going to be very right for Spondies, at least, that is my take on sports and AS.  Because inflammation causes many joints to deteriorate, and bones fuse together, many Spondies are not so flexible.  This joint and over all body stiffness is dangerous. It is a matter of Physics, really. Skyscrapers are designed to flex a little to deal with outside stresses; bridges flex for the same reason; super tankers have to flex too, due to the stress put upon it by the ocean. Things that don’t flex well, like deteriorated joints in a body, and areas where bones have fused together, or are partly fused, end up breaking, or fracturing when hit with a certain force. That is why many Spondies experience fractured bones due to accidents that many healthy people would not normally be affected by as badly.

Fracture characteristics of patients with ankylosing spondylitis

“Ankylosing spondylitis mainly affects the sacroiliac joints, spinal bony paraspinal soft tissue and peripheral joints, causing waist, back, neck, hip, hip pain and joint swelling, severe ankylosis and spinal deformity, ankylosing inflammation associated fractures are common in patients, mainly in the following five characteristics:
First, patients with ankylosing spondylitis fractures occur in the chest at the junction of the lower cervical spine and neck.
Second, the cause [of] ankylosing spondylitis patients with fractures, can be a trauma that is relatively light, limb excessive stretching is the main mechanism of injury, the majority of the three-column fractures, and are prone to dislocation.
Third, Ankylosing spondylitis [patients’ bones] fracture easily [and are] complicated by nerve injury, cervical spine fracture associated with cervical spinal cord injury is more common…[and as well the thoracic spine fractures and associated nerve damage].
Fourth, spondylitis patients with vertebral osteoporotic cancellous bone bleeding associated with the fracture is more complicated by epidural hematoma after the fracture, which is easily one of the reasons resulting in nerve damage.
Fifth, mortality was higher in patients with ankylosing spondylitis fractures, usually caused by respiratory failure caused by cerebrovascular accident.”

[ Source: http://www.hbfd.org/bone-diseases/ankylosing-spondylitis-2/fracture-characteristics-of-patients-with-ankylosing-spondylitis.html ]

In other words, if you have Ankylosing Spondylitis, be very careful NOT to get into any collisions, contact accidents, or other trauma. Yeah, how do you do that? I’m not sure…but for one thing, I suggest being a good defensive driver. The other thing I suggest is developing and having a better “Situational Awareness.” Those are my two suggestions. Go out and enjoy life, but be aware what is going on around you at the same time.

  • Do NOT count on anyone else to understand your situation, even though we wish that were the case.

Me and My Photography…and AS:

For me, in my photography pursuits, and adventures, I often end up feeling depressed because it seems that each time I’m feel’en it. By “it”, I mean that I feel the pain and affects of the long AS battle in my body. I have the will to go out and photograph; however, my body is saying, “I’m going to kick your ass when you go out and photograph, so watch out!

Sometimes, the AS wins, and nothing happens with my photography. Other times, I muster myself, get my much-reduced gear into my camera bag, and then go out for a couple hours of happy photographing.

Yes, AS even affects my Photography, and that really brings my mood down.

I would love to take a lot more gear with me to photo shoots, but my spine can’t handle it: between the one or two hours of walking around, bending uncomfortably, and having to lug around photo equipment, I’m feeling like about 10-miles of really bad county road by the time I’ve called it quits!

When I’m working my photography, I have to work quickly and plan out the best course of action to get good shots in the limited time I know my body will allow me to be out photographing. It isn’t easy. It is damned hard. I’m sure other people with AS, in other professions or hobbies, will have similar experiences.

Let’s Wrap this UP!

I have come to the end of what I have to say for right now, and I have just started covering the main topics of Life with Ankylosing Spondylitis.

On one hand, I can say that there is absolutely nothing good about AS! It is horrible to the n’th degree! The fatigue that AS causes is unbearable most of the time. The fatigue alone causes such discomfort that I don’t do things that I would normally love to do. In my opinion, AS robs a person of so many things in life; or at least, it makes it so much more difficult to pursue things that is wanted or needed in this life.

On the other hand, I will admit that the “Will to Strive”, “Having to Suffer More to Get things Done”, and “Being Persistent”, these things build character. Thus, I guess someone could argue that having AS helps us Spondies build Stronger Character and thus, being Super Human to overcome to get things done and shoot through the pain to do it…these are positive things if looked at in this way. Maybe I am delusional!

I want to add this at the end here, and it is very important: If you know someone, especially someone you care about, who suffers from any sort of disease that causes chronic pain, please have some extra consideration and compassion for him or her. Help them out more often. Try to understand, at least a little, what people with chronic pain go through on a daily basis. Put yourself in their shoes, even for an hour or two, and you will certainly have a new-found respect for people who endure with chronic pain.

Oh…and I did not mention it yet, but I seem to have passed on this “wonderful” disease to my youngest daughter, who also has Ankylosing Spondylitis. Oh, yes, the joys of guilt and anguish knowing what my daughter may go through as she gets older and has to deal with AS. Knowing this, is the worst thing I have had to experience with AS: I would gladly endure twice the amount of pain if my daughter could be cleansed of this disease…but it doesn’t work like that now, does it.


ETHEREAL DREAMS & HOPE – THIRD EDITION

ETHEREAL DREAMS & HOPE:  a Photographic Collection with Words to Boost Your Spirit - Third Edition, by Nawfal Johnson Nur

ETHEREAL DREAMS & HOPE: a Photographic Collection with Words to Boost Your Spirit - Third Edition, by Nawfal Johnson Nur

A Shout Out for – The Feeding Edge & Art Apple A Day

Hi!

I wanted to let you know of a couple of sites that you should visit! I mean, I highly recommend that you go visit these sites – one is a facebook page, The Feeding Edge & Art Apple A Day, and the other is a website/ART Blog, THE FEEDING EDGE.

These are sites run, produced, created and operated by a new friend, Jennifer Dye Visscher.

Jennifer has created these Internet Pages, as a way to get the word out there, about Ankylosing Spondylitis (AS), Health Advocacy, Positivity, and of course, her beautiful art.

Jennifer has created a wonderful platform to reach out to the public: She is doing an artwork a day project and this has been going on for the better part of a year. This project is called, “a daily art apple for Ankylosing Spondylitis awareness.

You see, Jennifer and I both have AS, so I know how important her project is, so I want you to be aware of it. Please visit her sites; you will enjoy seeing her apple artwork, which is quite amazing and beautiful. In addition, you will learn some new information about AS.

Thanks!

Photography and Arthritis

Photography & Arthritis

Photography & Arthritis:  There’s got to be a link.  No, no, not a medical link…Don’t think I’m that totally crazy to suggest that sort of thing, LOLOL! ;^} )
I’m talking about a link (the CHALLENGE of) between HAVING Arthritis, and, DOING Photography.

It’s quite difficult sometimes to even think about doing photography when I’m feeling pain from my arthritis.  Nevertheless, the overwhelming drive to be creative…and to be a CREATIVE in the face-of-pain, is what makes even the “Arthritic Photographer” sally forth in the quest to pursue and to capture a tremendous capture.

Click HERE, to see the rest of the blog entry.

Predictors of response to anti-TNF therapy in ankylosing spondylitis

http://rheumatology.oxfordjournals.org/cgi/content/abstract/kep422

Here is the results of a recent study done by researchers at the ARC Epidemiology Unit, University of Manchester. This may be useful to some people with ankylosing spondylitis.